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Malignant Mesothelioma In Detail

Australia is blessed to have world leading doctors, physicians, clinicians, scientists and dedicated institutions researching and treating malignant mesothelioma and asbestos related lung cancer.

Malignant mesothelioma is mainly initially diagnosed in one of two areas of the body, in the chest cavity (pleural and/or pericardium), or in the stomach area (peritoneal) – it can be diagnosed in both areas, but this is rare. Many people wrongly believe, when talking about malignant pleural mesothelioma (MPM), that it is lung cancer. MPM is a cancer of the lining that surrounds the lung, it is not classed as lung cancer – they are totally different cancers. This is particularly important to understand and remember if you are on social media or are reading media reports – malignant mesothelioma, of any form, isnot lung cancer.

If you are diagnosed with malignant mesothelioma it is imperative that a ‘specialist’ respiratory physician; and if applicable, an oncologist and thoracic surgeon conversant in asbestos related diseases be consulted. The Bernie Banton Foundation is available to help you find a relevant medical ‘specialist’, and to work out a pathway to navigate the journey ahead.

This page covers the following:

Diagnosing Malignant Mesothelioma

If Diagnosed With Malignant Mesothelioma

Asking For A Prognosis

Mesothelioma Staging

Mesothelioma Cell Types

Things To Consider

Diagnosing Malignant Mesothelioma

Diagnosing any form of mesothelioma is extremely difficult as the symptoms mimic the symptoms of many other more common diseases. Unless a GP or respiratory specialist is used to diagnosing mesothelioma, they will often look, and test for the more common illnesses the symptoms may present. This is why it is important if a person has been exposed to asbestos at any point in their life, they should always tell (and re-enforce) this fact to their GP or treating physician.

In the case of Malignant Pleural (chest) Mesothelioma, often a patient presents to their local doctor complaining of shortness of breath and/or chest pain – often this pain will be coupled to sharp ‘nerve’ type pain just below the shoulder blade in the back ; or in the case of Malignant Peritoneal (stomach) Mesothelioma, it could be an extended uncomfortable and/or painful stomach, or an unexplained lump.

It is common an X-ray or hi-resolution CT scan will be taken in the first instance – if mesothelioma is present, unexplained shadows or other indications may show up revealing either an excessive fluid build up in the pleural cavity (this is often referred to as pleural effusion), or the suggestion of cancerous tumour activity. Remember though, these symptoms may be explained by a multitude of other causes or diseases, they are not exclusive to mesothelioma.

Following this, a biopsy is normally arranged, this is commonly done by keyhole surgery. Keyhole surgery being performed in the chest area is known as VATS (Video Assisted Thoracoscopic Surgery). In the case of pleural activity where fluid build up is evident, a biopsy is often taken in conjunction with doing a pleurodesis – this will be performed by a thoracic surgeon. When keyhole surgery is used to take a biopsy from the abdomen, the procedure is called a laparoscopy. The specialist may elect to to do a less evasive needle biopsy, dependent on the what is needed, or possible due to the sufferers overall health or condition.

A biopsy is considered the only conclusive way of diagnosing malignant mesothelioma.

In some circumstances, a biopsy is not able to be undertaken, for example if the patient has severe heart problems or is considered too frail. In this case, the diagnosis may be made clinically using progressive X-rays and High Resolution CT scans and/or by testing pleural fluid.

REMEMBER: When consulting your doctor, it is important to mention your history of asbestos exposure, otherwise the possibility of an asbestos related disease existing may be overlooked.

If Diagnosed With Malignant Mesothelioma

If you have been diagnosed with malignant mesothelioma, please contact the Bernie Banton Foundation Support Co-ordinator so he can assist you to plot a path forward, working out what and how to do it, who to contact and when. The Foundation can help you with Medical, Supportive Care Options, icareDust Diseases Care and Legal referrals and advice. We can also help you with de-mysterfying many of the things you or a loved one are experiencing or wanting to know about, things like side effects of treatments; clinical trials, what to ask doctors and specialists, etc. Importantly, we can also advocate on your behalf. This is a totally free, no obligation service provided by persons who have walked the walk, essentially, because they have walked the walk and know the need!

It is imperative that a ‘specialist’ respiratory physician, oncologist, and/or thoracic surgeon (whichever is relevant) in malignant mesothelioma be consulted, and their advice followed.

We can assist you to find a specialist and help you with what questions to ask them – we are genuinely here to support you or a loved one.

The performing of a talc pleurodesis (malignant pleural mesothelioma only); chemotherapy; immunotherapy; clinical trials; radiotherapy; radical surgery and palliative care are some of the treatment options that can be considered. The option of not having any treatment at all is also something that may be considered. These treatment options are discussed in detail in the mesothelioma treatment therapies, surgeries, clinical trials and Supportive Care Option pages. The specialist oncologist or specialist respiratory physician will provide the relevant advice about such options and discuss the pros and cons of undertaking such treatment, or having no treatment at all.

It is important to remember that individual circumstances need to be assessed when considering treatment options. Treatment for one person suffering mesothelioma may not be appropriate for another person.

Asking For A Prognosis

If you or a loved one one is diagnosed with a malignant mesothelioma cancer, perhaps the very first question you will ask, or want to ask, is, “How long?”

It is a very simple question that no one can answer regardless of their expertise in treating or dealing with mesothelioma. This is due to the fact the disease does not react, or progress in the same way in any two people; neither can it be predicted how the disease in any particular person will react to whatever treatments are given. Chemotherapy, for example may work exceedingly well for one person, and significantly improve quality and length of life, but not work at all for another. Doctors can only talk averages, but we know when it comes to mesothelioma, no one is average!

If you get told you or a loved one has a certain time to live, take it for what it is – a guesstimate – nothing more! You may be told you only have months to live (which is the normal thing doctors will say), and then live for many years, on the other hand they could be right. Because of this uncertainty, you should not delay making decisions about things that could be considered important, the Bernie Banton Foundation can help you chart a path forward.

Mesothelioma Staging

Staging is only used when discussing malignant pleural mesothelioma, it is not normally used regarding peritoneal mesothelioma. The world’s leading body on mesothelioma, the International Mesothelioma Interest Group (iMig) has recommended using the TNM staging system, which they have adapted for staging malignant pleural mesothelioma.

The TNM System is the most commonly used cancer staging system, it describes:

T = Tumour Identifies the size and position of the primary mesothelioma tumour

M = Metastasis Simply put, metastasis is a term used when determining whether the mesothelioma cells have spread to other parts of the body away from the primary (starting) tumour area

Basically it means Stage 1 is still at the relative early detection stage where the cancer is confined to the original area. Stage 4 is where it has progressed to other parts of the body and considered to be well advanced.

Due to the same reasons listed previous, staging when first diagnosed can only give an indication of where the cancer is, it does not tell you how long the cancer has taken to get to this stage. Staging may help a specialist to decide what treatment to recommend, or whether to recommend a sufferer doesn’t have any treatment at all. Using staging to determine time frames only becomes relevant after a period of time as the cancer progresses (or doesn’t).

Mesothelioma Cell Types

Mesothelioma is grouped into 3 cell types according to how the cells look when being examined under a microscope. There are 3 types of mesothelioma cells:

Epithelioid – the most common type, and thought in the main to respond best to standard available treatment

Sarcomatoid – are the least common cell types and are considered to respond less to standard treatments

Biphasic – Is a mixture of epthelioid and sarcomatoid cell types

In the real world, it doesn’t seem to matter what cell type a person has. We have had people with sarcomatoid cell type mesothelioma survive for many years, and people with epithelioid cell type mesothelioma pass away very quickly.

Things To Consider

If you or a loved one is diagnosed with malignant mesothelioma:

Try not to take it to heart when a doctor gives you a time frame – they will have only made a guess after you have pushed them to do so. It may be close, or it may be meaningless!

Staging, may give a guide as to where the disease is at, and may be good for comparative purposes down the track to help measure progression or lack of it. But it should not be used as a definitive indicator when trying to get a handle on a life time frame.

Knowing what mesothelioma cell type you, or a loved one has may be of interest – but should it be used to help you make decisions? The bottom line is, it doesn’t seem to make much difference.

Do not put off doing things that are important to you.

Involve your family and friends in your life.

Contactthe Bernie Banton Foundation as soon as possible.

There is only one thing certain when it comes to mesothelioma:There is NO CERTAINTY!

Supportive Care Options

Supportive Care Options is about maintaining or improving quality of life for sufferers of asbestos or dust related disease, at the same time allowing their loved ones to also have a quality of life during all stages of the disease. It is about working out what support and care options are available, and then putting in place strategies to help sufferers and their loved ones navigate the journey ahead in the best possible way.

Supportive Care Options should be discussed with the Bernie Banton Foundation Support Co-ordinator as soon as possible after diagnosis. When you contact the Bernie Banton Foundation about Supportive Care Options, you will be dealing with somebody who has walked the walk. No two journeys are exactly the same, but the person you talk to will have walked a similar path. Having walked this road makes all the difference in being able to answer the multitude of questions you may have, and being able to help you navigate the often difficult journey that lay ahead for all concerned.

Find Out More

To find out more contact the Support Co-ordinator, Rod Smith on our 24/7 Freecall Helpline 1800 031 731 or via email: angels@berniebanton.com.au

If you, or a loved one has been diagnosed

with MALIGNANT MESOTHELIOMA ASBESTOS CANCER and you would like to talk to somebody who knows what it feels like to be in similar circumstances to what you are in, whether you are a sufferer or carer, please phone the Foundation’s 24/7 Support Helpline.

Note: The Bernie Banton Foundation is not accredited to provide advice. The information and/or advice provided is for assistance only. The advice of a qualified specialist should always be sought before making medical or legal decisions.